Diabetes (Young People)

Caroline Flint Excerpts

Wednesday 15th September 2010 Westminster Hall

[Mr George Howarth (Knowsley) (Lab)]

It is a pleasure to serve under your chairmanship, Mrs Riordan.

First, I would like to acknowledge the help that I have received in preparing the background information for today’s debate. I particularly wish to mention the Juvenile Diabetes Research Foundation, Diabetes UK, the Eye Health Alliance, the Aintree University Hospitals NHS Foundation Trust in my constituency, and last, but by no means least, my daughter Siân, who suffers from type 1 diabetes and who has helped in the preparation of what I am about to say.

In the past, too often health policy discussions have focused on hospitals, doctors and nurses, with no real recognition of the millions of people who live with long-term conditions. Over the past few years the situation has improved, and now we at least recognise that health care is as much about helping patients to manage their conditions more effectively throughout their lives as it is about mending broken bones in hospital, although the latter is, of course, important. Nevertheless, we are on a long journey. We now recognise that demographic pressures and lifestyle-related conditions, including obesity and the rising incidence of diabetes, pose major public health risks, yet every time we make that statement we risk overlooking a serious and growing problem, because it ignores people with type 1 diabetes—many of them children—whose condition cannot be prevented by changing their lifestyle.

So, what is type 1 diabetes? It is a chronic, life-threatening condition that occurs when the body’s immune system attacks insulin-producing cells in the pancreas. A normal, healthy body will regulate blood glucose using insulin, but in someone with type 1 diabetes, the blood sugar level can go too high or too low because there is insufficient, or no, insulin to control it. Insulin is the hormone that transfers glucose from the bloodstream into the cells to be used for energy. Type 1 diabetes is typically diagnosed in childhood. The peak age is between eight and 12 years, although in some cases it can be much higher. I heard today of a case in which the age on diagnosis was 23. As a result, most patients with type 1 diabetes live with the complications of uncontrolled blood sugar for many more years than those who suffer from type 2. Unlike type 2, type 1 diabetes is not in any way linked to being overweight, to lack of exercise or to any other lifestyle factor. Living with type 1 diabetes involves a relentless process of managing the condition, and there are no days off.

People with the condition have to rely on a programme of finger-prick blood sugar tests and insulin pump infusions or injections up to 10 times a day, just to stay alive. Although these tools prolong life, they are not a cure. Even with insulin injections, type 1 diabetes brings devastating long-term complications, including heart disease, stroke, blindness, kidney failure and, in some cases, limb amputation. In addition, there is a small but very real chance of sudden death, and life expectancy is reduced by about 20 years.

I recently tabled a question to the Department of Health about its estimate of the number of people with type 1 diabetes. It turns out that the Department does not have an estimate of the total number, but extrapolations from quality outcomes and framework data suggest that the figure might be about 230,000, which is some 10% of the diabetes population.

[Caroline Flint (Don Valley) (Lab)]

It is important that the Department of Health and the coalition Government show leadership in this area. Is my right hon. Friend not concerned by the latest figures, which seem to suggest that the incidence of type 1 diabetes is increasing by about 4% a year, with the biggest increase in children under five, in whom there has been a fivefold increase in the past 20 years? Does my right hon. Friend not agree with me that we need assurances from the Government that they will look into what is happening, and will look at what can be done both to tackle the condition when children are diagnosed, and to understand why it is occurring and increasing in the way that it is?

[Mr Howarth]

I am grateful to my right hon. Friend for that intervention. The figures that she has cited are correct, and I was about to go on to mention them.

I have mentioned the Department of Health’s estimate. The Juvenile Diabetes Research Foundation cites estimates that put the number of children and adults living with type 1 diabetes as high as 390,000, or 15% of the diabetes population. In a political context, that translates into approximately 500 people in every parliamentary constituency. There seems to be more consensus on the number of children and young people with type 1 diabetes: about 25,000 children in the UK have it. That means that as many as one child in every 700 has type 1 diabetes. Of all children and young people with diabetes, 98.6% will have type 1.

It is also worth noting that although the condition is not linked to lifestyle factors, the incidence of type 1 diabetes is increasing by about 4% a year. The biggest increase is in children under five, in whom there has been a fivefold increase in the past 20 years, as my right hon. Friend has said. To summarise, this is a complex condition that affects children and young people in significant numbers, and it has a profound impact on their lives.

Diagnosis often occurs on the occasion of the first major episode of diabetic ketoacidosis, with symptoms typically evolving over a 24-hour period. The symptoms are predominantly nausea and vomiting, pronounced thirst, excessive urine production and abdominal pain that might, in some cases, be severe. Left undiagnosed and untreated, diabetic ketoacidosis is fatal. In 2009, an eight-year-old boy died from undiagnosed diabetic ketoacidosis. An ambulance was called but, as it was thought that the boy was a low priority, was never dispatched. When an out-of-hours GP was called, the boy was diagnosed with swine flu and prescribed Tamiflu. He died days later. A major problem is that many GPs are not properly trained to recognise the symptoms and make a diagnosis, and there are countless examples of young people being treated for an entirely separate condition, when the real problem is that diabetes has been uncontrolled and not even recognised, and appropriate action therefore not taken.

As well as creating the risk of a major catastrophe and having ongoing consequences for physical health, type 1 diabetes has a profound effect on the lives of children with the condition and their families. It pervades every aspect of a sufferer’s life. Everything that the person eats, drinks and does involves a mathematical equation. For the child and their family there are no days off, and even a few hours of trying to forget can be dangerous. Living with this complex, chronic condition is at times very distressing and stressful for many parents, and it is a source of constant anxiety, and often embarrassment, for young sufferers.

A survey carried out by the parent group, Children with Diabetes, showed that a significant majority of parents had seen their household income decrease, and that there had been a notable impact on family life. The potential for long-term complications is clear and present, and is obviously a worry for many parents. Many children worry about being seen as different from their peers, and a disturbing 50% of parents say that their children have been bullied as a result of having type 1 diabetes. Although children and young people with diabetes are different in the sense that they continually have to manage their condition, they are like any other young person in most other ways. They are subject to the same pressures and temptations, such as the ones to use alcohol or illegal drugs, which could be fatal in their case.

Young people with diabetes have also succumbed to a trend that is informally known as diabulimia. They manipulate their insulin to achieve significant weight loss. In 2004, in “Living with Diabetes”, Susan Caltieri bravely explained how the phenomenon had affected her life. She said:

“Instead of dealing with the root of the problems—the relationship I had with my diabetes—1 started blaming my weight, thinking the only way to achieve my ambitions of getting on to the stage was to be skinny. I discovered that by decreasing my insulin and eating less, I could lose weight quickly. Eventually there were periods of time where I didn't inject insulin at all and could lose up to half a stone a day. 1 had developed a serious eating disorder...I don’t know how I actually survived. I was completely oblivious to the damage I was doing my body.”

[Caroline Flint]

I thank my right hon. Friend for giving way a second time and I congratulate him on securing this debate. What he is outlining to us is a worrying trend among young women who feel that they have to be a certain size to be attractive. Does he not agree that it is also worrying that we have heard nothing from the coalition Government, in the form of a public health measure, about how they will ensure that young people, particularly young women, with type 1 diabetes are supported so that they understand the dangers to their health of not taking their insulin? Moreover, how will the support that is there be affected by the unnecessary change to GP commissioning at a local level?

[Mr Howarth]

My right hon. Friend makes a strong point. It is a worry that the change in the system, which will vest more power with GPs, could have a negative effect; I hope that it does not. Will the Minister give serious consideration to the way in which conditions such as diabetes will be managed in those changed circumstances? I fear that GPs’ knowledge of the subject is too sketchy for them to be able to deal with the matter properly. As and when a Bill comes before the House, I will—if my party’s Front Benchers do not—table some amendments on the issue. To be fair, I should mention that the Minister for Equalities, the hon. Member for Hornsey and Wood Green (Lynne Featherstone), has raised the important issue of young women and body size and image and so on. The idea that young women have to be stick-thin to be attractive or employable is outrageous. I had not intended to raise this subject, but I have discussed it in the past with my right hon. Friend the Member for Don Valley (Caroline Flint) and the Minister for Equalities.

Although this story does not involve a diabetic, it is related to the issue that has just been raised. A young woman spent her entire life, from the age of seven, training to be a violinist. She performs in concerts and provides backing music for groups. I am talking about the way in which rock groups have attractive young women playing a violin and a cello behind them. This particular young woman had to perform at a festival. The agent who recruited her said that one of the requirements in the contract was that she got down to size zero. I am not talking about a pop star or a model—although I condemn such behaviour in those cases as well—but a serious musician who was expected to get down to that sort of weight. It is outrageous, and I am so glad that my right hon. Friend the Member for Don Valley raised the matter.

Diabetes UK has estimated that the number of young people with type 1 diabetes who manipulate their insulin to achieve weight loss could be as much as one third of all patients. Although it is possible that the figure may not be that high, discussions that I have had with one of my local hospitals—Aintree University Hospitals NHS Foundation Trust—and specifically with Maureen Wallymahmed, revealed that it is extremely hard to quantify the problem because young people tend to hide the condition from medical staff. I warmly commend the work of the unit at Aintree. It manages the transition in treatment from childhood through to adulthood, which is another area that requires attention.

The causes of the trend to manipulate insulin are deeply ingrained in society and cannot be simply addressed. One thing is clear, though: young people with type 1 diabetes need easily available help and constant access to support. Where appropriate, that should include access to relevant psychological therapies.

One obvious difference between young people with diabetes and older patients is that those young people spend far longer periods of their lives living with variable blood sugar levels. Consequently, the ongoing physical risks that they face typically occur much earlier in life than with type 2 diabetic patients. Complications can include heart disease, stroke, blindness, kidney failure and limb amputation.

For the purpose of this debate, I shall take one example of those complications. Diabetes can affect vision in several ways, but the most serious impact is generally on the blood supply to and within the retina. Most sight loss due to diabetes can be prevented, but it is crucial that the condition is diagnosed early and treated promptly. Up to one third of patients with diabetes will have background diabetic retinopathy, which needs to be monitored carefully as it can develop into irreversible sight loss. Early detection through screening and treatment is vital to prevent unnecessary sight loss. The Department of Health figures suggest that more people with diabetes are now being offered screening for retinopathy than ever before and to a higher standard, which is very welcome. However, the speed of progress appears to vary significantly across the country, with some primary care trusts not offering screening to old people with diabetes, which is a cause for concern.

In these difficult financial times, it is worth focusing on the cost of diabetes management to ensure that we are making the most of all available resources across the whole health system. Treating diabetes and its complications is extremely expensive. Each year, the NHS spends 10% of its budget on the condition. Given the lack of reliable data it is difficult to put a definitive figure on the cost to the NHS of treating type 1 diabetes. However, we know that once diagnosed, type 1 diabetes requires intensive control for the rest of the person’s life, and with the risk of complications, the cost of treating the condition in the NHS is high.

One of the major challenges that the NHS faces is to help patients manage their conditions more effectively, so that the necessary admissions for acute care can be avoided. Better management not only saves huge potential costs, but makes a significant contribution to improving the lives of patients with type 1 diabetes. To achieve that, we need to ensure that funding within the NHS supports care pathways and innovations that help patients manage their condition effectively, which means that medical research is vital.

At present, there are no definitive answers about what causes type 1 diabetes or how we can cure it. The only way that a cure will be found is through greater investment in medical research. In 2009, the Government funding bodies—the Medical Research Council and the National Institute for Health Research—committed £51 million to research to tackle the growing problem of diabetes. Of that amount, only £6 million was applicable to type 1 diabetes. By contrast, last year the United States Government spent $150 million, the Australian Government $36 million and the Canadian Government $20 million on funding world-class research to cure, treat and prevent type 1 diabetes.

We could take the easy option and leave it to others to carry out the research, but aside from the dubious ethics that that would involve, it would of course miss the point that investment in medical research provides wider economic gains as well as obvious health benefits. A recent report by the Office of Health Economics, a health think-tank, concluded that a £1 increase in UK Government or UK charity spending on medical research could lead to an increase in private research spending by the pharmaceutical industry of between £2.20 and £5.10. Other research by the Wellcome Trust has estimated that every £1 spent on public or charitable medical research yields additional GDP for the UK that is equivalent to a net return of 30p per year in perpetuity.

Once innovative treatments or technologies are available, it is essential that patients with type 1 diabetes have access to them. Insulin pump therapy is internationally viewed as the gold standard treatment for type 1 diabetes, reducing the risk of hypoglycaemia—very low blood sugar—and long-term complications. Despite that, however, less than 4% of the UK’s type 1 population use a pump—far behind Europe, at 15% to 20%, and the United States, at 35%. Given the long-term costs of managing the complications of type 1 diabetes and the immediate-term costs of unnecessary unplanned hospital admissions, the UK figure has all the hallmarks of a false economy. Indeed, I have heard of instances of young people being refused a pump because the control of their blood sugar levels has not been considered bad enough. Clearly, there is an issue that needs looking at, regarding the advice that medical practitioners are following.

Guidance from the National Institute for Health and Clinical Excellence recommends that insulin pump therapy is used as a treatment option for adults and children over 12 if attempts to meet long-term blood sugar levels fail or result in the patient having disabling hypoglycaemia. The NICE guidance also recommends that children under 12 with type 1 diabetes have access to insulin pump therapy if multiple daily injections are considered impractical or inappropriate.

However, despite that NICE guidance on eligibility, there is considerable inequity in insulin pump provision across the country. In some areas, less than 1% of people with type 1 diabetes use an insulin pump. Figures released earlier this month by the Medical Technology Group indicate that there is indeed a “postcode lottery” of insulin pump access across the UK, with access varying from 0.4% of the type 1 population in Luton to 17% in Blackburn.

Only five of 113 primary care trusts that were questioned had any kind of strategy in place to implement the NICE guidance on insulin pumps in line with their statutory duty to adhere to NICE technology appraisals within three months of issue. I hope the Minister will follow up that issue with PCTs. Decisions about funding for pump services seem to be based on cash-flow benefits rather than on the benefits that such services would provide for patients.

Another exciting development that offers real hope to patients, as long as they are able to access any future solution, is the artificial pancreas—the first realistic hope for a cure for type 1 diabetes, albeit a mechanical one. Vital research supported by the Juvenile Diabetes Research Foundation is working towards developing an artificial pancreas system, a technology that will do the job of a healthy pancreas. Such a system would provide exactly the right amount of insulin to the body exactly when it is needed.

The artificial pancreas system requires three things: an insulin pump, a continuous glucose monitor and an algorithm. Insulin pumps and CGMs are already available and researchers from the Juvenile Diabetes Research Foundation have developed an algorithm that will allow the two devices to communicate with each other. Artificial pancreas systems are expected to be publicly available within the next five years.

However, there is a real risk that while people with type 1 diabetes in the US and other countries will be able to use that new technology, people with type 1 diabetes in the UK will miss out, because they do not have access to an insulin pump or a CGM, and because the structures and expertise are not in place here to support the existing technology, let alone the next sophisticated technological development. Rectifying those problems would be a real indicator that we are serious about having an NHS that has the principles of excellence, efficiency and equity at its heart.

I recognise that the cost of an insulin pump, which is about £3,000, is significant. However, given that NICE recognises the value of bariatric surgery—what is normally known as the insertion of a gastric band—as a mechanism to tackle type 2 diabetes and given that such surgery costs up to £7,000, we need to get the costs of adopting innovative medical technology such as an insulin pump into perspective.

In conclusion, what needs to be done? Given that many cases of type 1 diabetes go undiagnosed, we need to improve awareness among GPs, so that the condition can be diagnosed in the first place. There is an argument that GPs should be given a series of protocols on how they should deal with certain symptoms. Increased understanding of the nature of type 1 diabetes is particularly important given that Government proposals envisage that GPs will take the responsibility for commissioning care as well as being the first point of call for diagnosis.

In addition to the early identification of diabetes, we need to encourage commissioners to plan adequately for treating the long-term complications. That would include ensuring adequate provision for retinal screening, to close the gap between those being offered screening and those actually receiving the test. In particular, we must address the “postcode lottery” that exists in relation to that procedure.

Above all, we need to ensure that patients have easy access to care that is shaped around their personal needs. In many cases, that will mean providing access to a multidisciplinary team, with patients enjoying a consistent relationship with advisers. In addition, psychologists and all those involved in the care of vulnerable young people need to understand the risks of behavioural complications, such as diabulimia, and the social pressures that can lead to those complications.

It is hugely important that GPs are made aware of type 1 diabetes. If they do not know about the condition, they will not recognise it; if they do not recognise it, they will not diagnose it; and if they do not diagnose it, the consequences for some young people could be fatal.

We therefore need to be imaginative in the way that the NHS funds and provides new therapies. There are numerous ways to provide advice. The important thing is that patients get that advice when and where they need it. Although special hospital units, such as the one at Aintree that serves my constituency, will continue to play a vital role, we need to be open to the idea of using other locations as a means of delivering care, particularly in the primary care sector.

Ongoing telephone support, community-based pharmacy care and mobile technology all have a role to play. The key is to ensure that we integrate these solutions, so that they work effectively across the local health economy to avoid unnecessary hospital admissions and reduce long-term complications.

If I have painted a gloomy picture, perhaps I can conclude by making a slightly more upbeat point. The dangers and risks to young people of type 1 diabetes are great, and recent developments can make them even more serious, but there are examples of leading sportsmen and women, entertainers and a host of other people successful in their chosen professions who manage to cope with type 1 diabetes, have a life and career and even bring up a family. In many respects, their lives exceed their expectations and those of society. With help, type 1 diabetes can be managed, and young people who have it can achieve everything in life of which they are capable. Our responsibility is to ensure that they get that help.